Archives for July 2017

So it seems that gremlins managed to get into my blog and those of you who kindly subscribe to it won’t have received notification of my last four posts!

However, my IT guru has been on the case (thanks Andrew!) and has sorted the problem for me – so I have linked all four posts below.

The last month has been a busy one and includes a few changes and new experiences for us that may be of interest to you – including a look at how we all coped with Lucia’s first year at school, new compression details and bandaging trials.

I hope you can find a few minutes to catch up on where we are and as always I love to read any comments of similar experiences or if anyone has any advice or tips please do get in touch. These can be invaluable as everyday truly is a learning day with this condition.

I had planned to write this post over the weekend when we got Lucia’s bandages off, but we had some gorgeous weather and made the most of that instead!

My last post focussed on Lucia getting the bandages on and how she managed (amazingly!) – if you want a wee read click here. This post is about the results and future plans.

So – Lucia managed to keep the bandaging on for a full 24 hours which was brilliant for her first time. She slept all night in them and the only issue she had was not being able to get her ‘snuggly suit’ (fleecy onesie) on in the morning because her ‘pass the parcel’ was too big. (She nicknamed her bandages pass the parcel because it had so many layers like the party game!)

We headed in to see Lynne that morning and she was delighted that Lucia had managed so well. She told her she was so proud of her and had done brilliantly which made Lucia feel very proud of herself. (This woman is so special).

She then cut the bandages off to see if they had reduced her swelling. I should say here that Lynne didn’t put them on as tightly as she could have – this was more just to give Lucia a feel for them and to see how she would react. So bearing this in mind we were still amazed at the results.

Her leg looked and felt so different! The bandaging had visibly moved so much of the fluid from the outside of her leg and her ankle had the most beautiful little shape to it. And as for her foot – I could feel all of the bones on the top of her foot and her little toes were so long.

Normally when we take off Lucia’s compression at night – and particularly after she has worn her toe caps and shoes – we can feel one of the bones on the top of her foot. This time though it felt so strange to be able to feel the solidness of her whole foot if that makes sense? Hard to describe! Lynne said it was because there was more ‘depth’ to the swelling reduction rather than the superficial reduction of compression garments on a day-to-day basis.

And this ‘depth’ of reduction applied to her whole lower leg and foot. You can see in the before and after photos what I mean.

We were definitely impressed by this and excited to see how tighter bandaging put on for a longer period might go. So much so that we have planned it in for August time.

By the evening though we could see the fluid starting to gather again – you can see this in the picture below which shows the results just after bandaging (left photo) and then her limb in the evening of that day (right photo). You can still see the difference in comparison to the original ‘before’ photo but it just goes to show how quickly that fluid starts to return.

It also just reminds us that we still really don’t know what we are dealing with when it comes to Lucia’s lymphatics – where the issue is, what the issue is – is it a node problem? A structural problem? Both? And until she is a little older we won’t be able to find this out as she has to be around eight years old before any type of lymphoscintigraphy test can be carried out. However, there has been significant movement on the genetics front which I will post on soon.

Anyway, we were definitely happy with this first little venture into bandaging, how Lucia coped with it all like a little star, the results that came from it and the plans we have now put in place to try it again in a few weeks’ time. Watch this space.

Just a short post this evening to update on a new treatment we are trying for Lucia – new for her but not new for any other lymphies who may be reading this. We were up bright and early to meet Lucia’s therapist, Lynne, in the hope that Lucia would allow her to do some bandaging of her right leg and foot to see how that would impact on her swelling.

We had put this into the diary a few months ago when her swelling was particularly bad, but until she was off school on her summer holidays there wasn’t an opportunity or time to try it out. We talked through all of this with Lynne and at the time I remembering feeling so anxious about it all. From the outside looking in putting some bandages on may not seem like a lot – but to us it was another huge step in Lucia’s lymphoedema management.

A new step

It’s a much more intensive treatment that should ideally be used for weeks at a time to see any real results – but this first time was to be more of a ‘taster’ for Lucia…to see if she would allow it, to see if she could tolerate it, to see if she was sore, uncomfortable or found it unbearable to wear. Or on the flip side to see if she was comfortable and if she could bear to wear it for even a short period of time.

Just thinking about all of this really made me stress – it’s almost like once you start something with this condition you can’t stop it. Once we started the massage it was everyday, when she started wearing the compression it was everyday, the machine is used on a five times a week basis not to mention all the other daily ins and outs…so if we started bandaging how often would this have to be added into her care routine on top of everything else?

Talking and compromising

We spent the last week talking to Lucia about it, trying to prepare her for it and for the first little while she was adamant that this wasn’t going to happen. She gave us a firm NO. (Strong little personality right there!). But every now and again we would mention it to keep trying to plant the seed, though at a couple of points she got very teary because she was scared and nervous of something new. Completely understandable.

In the end we said we would just go and see Lynne, she could feel the bandages and the foam and if she didn’t want them on that was fine. This is not something we wanted to push on her as further down the line it may be something she really needs, so we didn’t want to risk a bad first experience. However, we did also throw in the idea of a hot chocolate and a new toy if she did allow Lynne to put them on – even just for a little while…which swayed things a little bit!

And, of course, she was an absolute star. As was Lynne. She showed Lucia the foam and the bandages, explained how she would put them on, let her have a good feel of everything and a bit of a play with them, assured her they wouldn’t hurt, nothing would stick to her skin and if she really didn’t like it then she would take it off right away.

Let’s do this!

Then she was ready to give it a go. She chatted and laughed as the process started and loved the little ‘pillows’ of foam that went between her toes to keep them comfy. As the layers went on she said it felt weird but ok and when Lynne got to her knee she said that was enough. Ideally we had hoped to do thigh high but for a first go to the knee was amazing. She kept saying it felt weird as Lynne was putting the foam and bandages on, but by the end she seemed comfortable and although still ‘weird’ she said it also felt ‘great’.

We decided to take it hour by hour and Lynne sent me home with special scissors in case she needed them cut off at home. The goal was to keep them on for 24 hours and take her back to Lynne in the morning so she could cut them off and see how her swelling had reacted.

Right now she is sound asleep in bed after a big day. These things always take quite a lot out of her and it’s easy to forget what is going on underneath the bandages. That it is squeezing her leg and foot tightly to move the lymph and that her body and organs are then having to cope with this extra fluid being pushed around her body. Exhausting.

Superstar

As always, she has completely amazed us in how she takes everything in her stride. Although she couldn’t wear a shoe over the bandaging she has still wandered around the house as normal and when we went out for family tea she happily walked around the restaurant too!

We are so so proud of how she has handled today and have our fingers crossed for a peaceful nights sleep. I’ll update at the weekend.

Last week saw the end of school for another year with Max finishing Primary 4 and Lucia completing her Primary 1 year. And what a year it has turned out to be. School reports came home and made us beam with pride at how kind and helpful they had been, how hard they had worked, their fantastic achievements and, most importantly, how much they had enjoyed the school year.

The school they attend is simply fantastic. Their teachers and classroom assistants have cared for them so much through the tough times (including broken bones/extra lymphoedema swelling/falls) as well as teaching them all that they needed to know throughout the year.

They went to school happily most days (sometimes after being asked to brush their teeth/put their coats on 20 times!) and have really grown in confidence, ability and knowledge since September. They both make us burst with pride on a daily basis at the incredible little people they are becoming. We simply could not ask for more and truly have the two best children in the world! (Disclaimer: slight bias).

This was Lucia’s second year at this school – she spent an amazing first year in the nursery department which she loved and gave us a first taste of someone else looking after her needs. However, this year was her first ‘proper’ school year and anyone who follows the blog will know how nervous we were at the start.

However, she has had an outstanding year which has seen her learn to read and write, do addition and subtraction, made close friendships, took part in physical education, outside play, attended a school trip and took part in sports day – just like all the others in her class.

Not only did she take part but she also brought home prizes! She was presented with the prestigious P1 Literacy Award at the school awards assembly and won the bronze medal in one of her running races on Sports Day. Watching her racing with a big smile on her face and crossing the finish line in third place was just amazing!

The talent show

She also came third in the school Talent Show when she performed a little ballet routine to lullaby music (made up by me!) in front of over 400 children and teachers – this makes my heart want to burst! Knowing she has this amazing confidence to want to get up there and perform – and then actually doing it – makes me fill up just thinking about it. And, most importantly, she loved every minute. On the morning of the show she said the ‘butterflies are flapping in my belly but I am mostly excited!’. The butterflies felt like they were whipping up a tornado in my tummy that morning too! But off she went, eager to get on stage and show her moves!

She came out of school on cloud 999 never mind cloud 9, beaming from ear to ear saying over and over, ‘I just can’t believe it!’. I think this may have been the happiest moment of her little life so far and to see her feeling truly ecstatic and so proud of herself was an incredibly special moment. And Max was almost as excited as Lucia! He watched her perform and came running out of school saying she was brilliant, remembered the whole routine (he knew every step too!) and his smile of pride for his little sister was almost as big as Lucia’s!

‘I can do anything I want’

Lucia has achieved all of this in spite of her lymphoedema. Although her condition plays on my mind pretty much all of the time it doesn’t feature as a ‘big thing’ in her little life – which is exactly what we have been aiming for. She will say at times, ‘I have lymphoedema but I can do anything I want’ – and guess what? She can and she does. And not once has she ever thought she can’t. And this makes us immensely proud and incredibly emotional. (I am aware I am completely overusing the word proud in this post!).

Reassurance

We are also so thankful that Lucia has a wonderful assistant at school who has been there everyday to ensure all her additional needs are met. She pulls up her compression garments every half an hour and ensures they, along with her toe caps, are worn appropriately and comfortably, helps her get her shoes on and off, assists her at toilet visits, watches her in the playground for any trips or falls and treats any cuts and scrapes with impeccable care. She also supervises her at steps and stairs as Lucia is still wary of these and can tend to trip, as well as keeping her legs comfortably elevated under her desk. She is the most caring person who treats Lucia with such kindness that enables us to feel reassured when she is at school.

What we have learned this year

We have also learned a lot this year about how Lucia’s condition can fluctuate. She does go through periods where her swelling can be worse and during the school year she had a particularly bad ‘flare up’. You can read about this here. When this happened we were able to put extra measures in place during school to try and help this extra fluid build up – that was to always have her legs elevated when she was sat at her desk.

We always knew Lucia tended to tire more quickly than her friends and we could definitely see this during the school year. So we have had to carefully manage her fatigue levels by making sure she has proper rest time and elevation after school, only took on one activity outside of school – one hour of ballet on a Saturday morning – and gave her plenty of time to rest at the weekends in time for Monday morning.

She definitely seemed to pick up every illness going – it was just one thing after another – and even when she had eventually got over each thing she still always seemed to have a lingering cough or sniffly nose. Even now, with school finished she is currently fighting a virus of some sort!

Summer has arrived

But the main thing this year was how much Lucia enjoyed her school year, how well she was looked after and everything she has learned. Having her big brother there looking out for her is also a lovely thing and he would always give her a little high five if they passed in the corridor! Now Summer is here and with weeks stretching out in front of us we can’t wait to have some holiday fun together as a family. Bring it on!

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More